Question about kinds of pain

Jemima

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Thanks again for your comments. I've just recently moved house and I'm about to register with a new doctor. I'm going to pick a practise with progressive attitudes and then see if I can get a neurology appointment. Also, I'll look into those supplements. Cheers (y)
Good luck!!
 

sunkacola

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I'll just add on the fog front, I've found supplementing for mitochondrial support transformative. Started with coq10 and ALA, and am now finding more improvement with acetyl-L-carnatine.
Now, that is very interesting, Jemima. Because my chiropractor recently started me taking l-carnitine every day. I told him I was not able to gain any weight and that daily, no matter what I eat, I was having terrible energy drops. As if the floor just dropped out from under me around 3:30 to 4:30 every day and I'd be flat on the couch unable to move. He suggested it was because my body was failing to assimilate the fat it was being given (and fat is what produces energy), and that the l-carnitine would help with that.

I have been taking it daily for the past 5 weeks and only twice had an energy drop like that. It's expensive, unfortunately, but I am going to continue anyway, of course. Energy is everything and worth whatever it costs to help my body in that way as long as it's not drugs.

To hear that it might help with brain fog is encouraging, although my brain fog has not gotten better so far...........it seems to be getting steadily worse (although not worse necessarily since I started the l-carnitine). I am hating it that I will not be able to remember someone's last name....or even the word for something that is common. Wish there were a cure for that, at least, even if not for the pain and mobility issues.
 

sunkacola

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Thanks Jemima and JayCS! Your thoughtful, sensitive and extremely informative replies are very gratefully received. I absolutely realised that no-one was trying to be unhelpful. I just couldn't help explaining my frustration at my not knowing exactly what is wrong with me. Even though it won't "fix" me, somehow, having a name for what ails me feels like a useful first step. I very much look forward to reading all that you have written tomorrow (ironically, sitting concentrating on a computer is the very worst thing for my brain fog so I can only do it in manageable chunks.) Thanks again! :)
Having a name for something does help in some ways. Even besides having something to write on an insurance form, it helps you not to feel alone and crazy, which many people with these symptoms feel prior to having a diagnosis and/or finding a community like this one.
We have all been through that same frustration, wanting the doctors, who are supposed to be experts, to tell us what is going on.

Unfortunately, they can't always do that, of course. I finally had to tone down my frustration and what worked for me was to remember that the human body-mind is an extremely complex thing. More so than that of many of the other animals who live on this planet, and the amount we know about it compared to what we don't is like a postage stamp in a football stadium. A mechanic can pull out the tubing from a car and say, See, this is full of holes. An x-ray can show a broken bone. But there are many things the medical establishment just don't understand yet.

That's when I knew I had to be my own expert on me, and do my own experimenting to see what worked for me and what did not, because whether the diagnosis was real or not I just needed to manage my symptoms better so I could have a life. I've been recommending it to people ever since. but it's not easy....none of this is. I think having a forum like this one is very helpful, because you can get ideas and support and, when you need it, a sympathetic virtual ear.

Glad you found us and I hope we can help.
 

Jemima

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Now, that is very interesting, Jemima. Because my chiropractor recently started me taking l-carnitine every day. I told him I was not able to gain any weight and that daily, no matter what I eat, I was having terrible energy drops. As if the floor just dropped out from under me around 3:30 to 4:30 every day and I'd be flat on the couch unable to move. He suggested it was because my body was failing to assimilate the fat it was being given (and fat is what produces energy), and that the l-carnitine would help with that.

I have been taking it daily for the past 5 weeks and only twice had an energy drop like that. It's expensive, unfortunately, but I am going to continue anyway, of course. Energy is everything and worth whatever it costs to help my body in that way as long as it's not drugs.

To hear that it might help with brain fog is encouraging, although my brain fog has not gotten better so far...........it seems to be getting steadily worse (although not worse necessarily since I started the l-carnitine). I am hating it that I will not be able to remember someone's last name....or even the word for something that is common. Wish there were a cure for that, at least, even if not for the pain and mobility issues.

Check which form you are taking! As far as I understand it, Acetyl-L-Carnatine is the only one that crosses the blood brain barrier. Other forms provide the energy boost elsewhere in the body, but only this form impacts energy processing within the brain.

Great to hear that it's helping already - I read today that the effects are cumulative over quite a long period, so I'd love to hear how you feel in a couple more months! It is indeed essential for transforming fats into ATP within mitochondria, so it makes sense that it could help with healthy nutrient assimilation. Interesting stuff.
 

seniorzala

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Teljes nagy vérkép, tekintettel: TSH és ragaszkodni T3+T4, Ferritin, B12, D3 és 25 OH-D, 3 hónapos Cukor átlag, homocisztein, e-GFR,vesefunkció
Klinikum + Tünetek + Labor = lehetséges diagnózis
Lehetséges, hogy a hemoglobin ok, de Serumferritin a normális alatt van, és ez a fáradtsághoz vezet.
D3 ideális szint: 65-85 ng/l Brittaniában referenciaérték egy kicsit alacsony....... szerintem
Homocistein: ha magas akkor sok a "méreg" és kárositja az artériákat. szabvány: 6mml/1 alatt, annak is a mutatója, hogy megfelel e a glutation szintje, ha alacsony akkor a szervezet meg tud küzdeni számos vegyi anyaggal.
itt is elmondom: fontos Amalgám ki !!!
TSH +T3 és T4-együtt kérni !!! Föleg a Hölgyek !!!! de a fiuk is.... T4=szabad tiroxin,T3:szabad trijodtrionin ,pajzsmirigyprobléma okoz fáradtságot.

Jemima köszönöm ......
Good night.....
 

Jemima

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Teljes nagy vérkép, tekintettel: TSH és ragaszkodni T3+T4, Ferritin, B12, D3 és 25 OH-D, 3 hónapos Cukor átlag, homocisztein, e-GFR,vesefunkció
Klinikum + Tünetek + Labor = lehetséges diagnózis
Lehetséges, hogy a hemoglobin ok, de Serumferritin a normális alatt van, és ez a fáradtsághoz vezet.
D3 ideális szint: 65-85 ng/l Brittaniában referenciaérték egy kicsit alacsony....... szerintem
Homocistein: ha magas akkor sok a "méreg" és kárositja az artériákat. szabvány: 6mml/1 alatt, annak is a mutatója, hogy megfelel e a glutation szintje, ha alacsony akkor a szervezet meg tud küzdeni számos vegyi anyaggal.
itt is elmondom: fontos Amalgám ki !!!
TSH +T3 és T4-együtt kérni !!! Föleg a Hölgyek !!!! de a fiuk is.... T4=szabad tiroxin,T3:szabad trijodtrionin ,pajzsmirigyprobléma okoz fáradtságot.

Jemima köszönöm ......
Good night.....

Complete large blood count with regard to: TSH and adhere to T3 + T4, Ferritin, B12, D3 and 25 OH-D, 3-month average Sugar, homocysteine, e-GFR, renal function Clinic + Symptoms + Laboratory = possible diagnosis
Haemoglobin may be the cause, but Serum ferritin is below normal and this leads to fatigue.
D3 ideal level: 65-85 ng / l In Britain the reference value is a bit low ....... I think
Homocysteine: if it is high it has a lot of "poison" and damages the arteries. standard: below 6mml / 1, it is also an indicator of whether it meets the glutathione level, if low then the body can fight many chemicals.
here I also say: amalgam is important !!!
Ask for TSH + T3 and T4 together !!! Especially the Ladies !!!! but boys too .... T4 = free thyroxine, T3: free triiodothyronine, thyroid problem causes fatigue.

Szívesen!
 

sunkacola

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Check which form you are taking! As far as I understand it, Acetyl-L-Carnatine is the only one that crosses the blood brain barrier. Other forms provide the energy boost elsewhere in the body, but only this form impacts energy processing within the brain.

Great to hear that it's helping already - I read today that the effects are cumulative over quite a long period, so I'd love to hear how you feel in a couple more months! It is indeed essential for transforming fats into ATP within mitochondria, so it makes sense that it could help with healthy nutrient assimilation. Interesting stuff.
Yep, it's Acetyl. I like hearing that it may be even better in a few months! Now, if I could just find a way to improve my brain functioning. Frankly, I think some of the brain fog for me just comes down to the fact that I don't have enough interaction with others. I think that can just about make a brain atrophy! Of course, I read and I write and so on, I don't just vegetate. But "they" say that being without meaningful companionship most of the time is a contributor to the development of dementia, because the brain is not being used enough, and while I really have no concerns about that I do notice that i often forget the name of something I know perfectly well, and that is frustrating.

It's hard to make good connections with people when we are in this world-wide Plague Mode. But I came to be thinking today that this is no longer going to be any excuse for not getting something done, because while I strongly suspected this from the very start 18 months ago, at this point it is very clear that there is not going to be any "Normal" to "get back to". I believe that from now on, constant significant change is going to be our lot on this planet. Covid change, climate change, mandates changing, rules changing, everything is likely to be far more in states of large fluxuation than it has been before. So I am finding it interesting to figure out how to navigate this and to be light on my feet and ready to land well if the floor drops away, and at the same time pursue the things that can help to make me and other people healthier and happier. It's a challenge.

OOPS I strayed off topic quite a bit there. sorry. I will stop now!
 

Jemima

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It's hard to make good connections with people when we are in this world-wide Plague Mode. But I came to be thinking today that this is no longer going to be any excuse for not getting something done, because while I strongly suspected this from the very start 18 months ago, at this point it is very clear that there is not going to be any "Normal" to "get back to". I believe that from now on, constant significant change is going to be our lot on this planet. Covid change, climate change, mandates changing, rules changing, everything is likely to be far more in states of large fluxuation than it has been before. So I am finding it interesting to figure out how to navigate this and to be light on my feet and ready to land well if the floor drops away, and at the same time pursue the things that can help to make me and other people healthier and happier. It's a challenge.
Sometimes a good topic meander is exactly what's called for! It's so interesting to read your perspective on the state of the world at this point - my intuition is more or less the same!

The challenge of keeping our brains going when isolated from others is indeed quite demanding. In that sense, the pandemic has been such a strange time. Fibromyalgia is already quite isolating, and it's tricky not to let the virus and periodic lockdowns be an excuse to slide into full-on hermit-hood! I always seem to need to fight against that.

Company or not, I think holding on to our curiosity and feeding it as much as possible is the best way to keep our noggins working. Drawing us rather beautifully back round to the topic at hand, I forgot to mention that yet another benefit of Acetyl L Carnitine is that it protects the brain and slows down cognitive decline! Several studies have looked at its efficacy for slowing the onset of dementia. So there you go, you weren't really off-topic at all :giggle:
 

Flexecif

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Acetyl L Carnitine is that it protects the brain and slows down cognitive decline! Several studies have looked at its efficacy for slowing the onset of dementia.
Good to know this.
 

sunkacola

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yet another benefit of Acetyl L Carnitine is that it protects the brain and slows down cognitive decline! Several studies have looked at its efficacy for slowing the onset of dementia.
This is very good news indeed! It's more than worth the price of having to consume something foul tasting every morning! thanks for posting that, Jemima. You seem to be a fountain of good information, and I appreciate that. :)
 

Jemima

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This is very good news indeed! It's more than worth the price of having to consume something foul tasting every morning! thanks for posting that, Jemima. You seem to be a fountain of good information, and I appreciate that. :)
Any time! My work dictates that I spend half my life researching, and honestly, I don't think I could find the off switch if I tried! Here's to the rewards of yucky morning beverages 🍹
 
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